On Saturday I slipped over on the decking when outside emptying the bin and broke my ankle! The hospital gave me heparin injections for 10 days due to being immobile. I was at a minor injuries unit and the nurse I saw had no knowledge of Et so she checked with a consultant at the main hospital site whether it was ok for me to take Heparin. She said it was but tbh she didn’t seem certain. I have now had 2 injections and tonight the injection site has bled a lot which I find worrying. I am going to ring my CNS tomorrow but I am wondering if anyone with ET has experience of this?
Karen x
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Nickthedevil
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Hi Karen, I was on heparin during my pregnancy with ET - twice a day injections. I bruised a lot from each injection. My pregnant stomach was always covered with 1-2 inch bruises at all the injection sites. Be sure to rotate injection sites and stay 2 inches from the belly button. I do Pegasys injections in my stomach now. On rare occasions, I notice I suddenly bruise in one big spot. Its like I hit a blood vessel during that injection?... I don't know. Otherwise bleeding was very rare. Maybe just a little drop immediately after. If you are bleeding more than that I would definitely follow up with your MPN specialist. They are really the only ones that really understand this type of disease and thinning the blood with Heparin for a broken ankle. Good luck with the follow-up! And I'm so sorry you broke your ankle!!! No fun at all.
Hi, thank you for your reply. The bleeding has finally stopped but I will definitely give them a call tomorrow. It really brought it home how little general health care professionals know about our condition. In addition to calling my CNS I will certainly be discussing it with the consultant at the fracture clinic on Wednesday. I am so frustrated by the fracture - my 3rd in 3 Years, shoulder, wrist and now ankle, and a scan shows no osteoporosis so I must just be clumsy! 😱
I'm sorry! Three in three years? Oh my, that's awful! As for health care professionals - I agree they know nothing about this. During my 1 million OBgyn appts during pregancy, they kept saying I had thrombocypenia (low platelets) at every visit. I was like NO!! I'm the opposite! I clot! Or bleed... its anyone's guess, really. Ha! But yes, no general health professional has a clue about this... and if they act like they do, I'm even more skeptical! I trust no one besides my specialist when it comes to anything with my health. Good luck. Rest up! Happy healing!
I'm currently on heparin following a knee replacement surgery, I also had it earlier when I had my other knee done. I have had no problems. It could be that you hit a small blood vessel that was in that area x
Thank you. I had a similar situation with my GP surgery where they thought I had thrombocytopenia and it took ages to convince them otherwise! Take care and stay well
This is why it is so important to consult directly with a MPN Specialist about these questions. Most docs just do not know the answers to questions related to MPNs.
I have been on heparin post-surgically and did not have a problem. It was a concern that due to the PV with thrombocytosis I would be at risk for a hemorrhage due to the elevated platelet levels. My von Willebrand factors do drop below normal sometimes when y platelet levels are higher. It is important to monitor for the potential for abnormal bleeding when you have ET and take a blood thinner. That is not to say you should not take heparin since there is certainly a risk of thrombosis. Just to be aware and monitor for potential issues.
I also broke my ankle in December moving out of the way of a person on a path and falling down a small hole in verge. Again A&E checked with local haematologist but I also checked with my CNS who said it was ok to take. I have been fine so far but am being careful not to even cut my fingers etc. as I know I bleed easily when on blood thinners from previous experience. We are all so different although we have the same condition, it’s definitely best to check with your specialist or CNS. I hope you heal well, best wishes for a speedy recovery.
I’ve used heparin both post-operatively and for long haul flying (when we still could!).No problems apart from bruising around the injection site, which could be quite extensive but looked worse than it was.
The above was before I started Pegasys - my consultant advises I no longer need heparin for travel as my counts are in normal range and the issue of surgery hasn’t yet come up…
Definitely worth you getting further advice from your medical team.
I have had it prior to and after surgeries but it was “low molecular weight” heparin taken once a day. No problems with it. If not administered properly (no pinching up skin to inject) then yeh you bleed plus always you get bruised.
Hi Karen, sorry to hear you had bleed. I am a bleeder too but ,as Hunter suggests, am on Eliquis and doing well with it. Was on both Eliquis and Aspirin but getting little bleeds, so only on Aspirin twice a week now.Best of luck with it,
I am 62, diagnosed with ET JAK2+ sixteen years ago. So far maintained on aspirin.
However, in that 16 years I have had 3 hip replacements (one each and a revision on the right one). Also 2 left foot surgeries.
For each operation I had to stop taking aspirin beforehand. (The difference between our situations being that mine was planned and yours wasn’t)
Are you on aspirin?
After the surgeries I had to self inject with Heparin for a month to prevent clotting.
Sometimes I got a small bruise, but mostly not. I didn’t have any bleeding.
I do know that whilst in hospital with each hip surgery that my platelets raised up to nearly 1000,(causing alarm at the orthopedic hospital), however each day I Was tested and the platelet counts lowered down to ‘my’ normal, the 600s.
I would definitely contact your doctor who manages your ET for advise and reassurance.
I think you're supposed to administrator the injection below the level of the belly button too as the area above is more vascular and therefore will bleed more x
Hi Yes I had to do 10 Days of Heparin after my knee replacement back in 2014 but did not take my Hydroxycarbamide until finished, but all was OK bloods soon got back to acceptable levels once restarted, had to stop Hydroxycarbamide two days before op as well, but they constantly did blood tests to see if platelets were behaving.Mind you every time I injected it did bleed and got some lovely bruises to tell the tale but all was OK.
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